So we know that Zebras are rare, but what happens to those Zebras who are so rare that the other Zebras don’t even know who they are? I’ve been having a lot of medical setbacks lately, and have been struggling to get answers. We all know that the doctors aren’t always the best at understanding our rare conditions, so it is difficult to rely on them for support. Most times they simply add to the multitude of frustrations that we deal with on a daily basis anyway. We generally seek out advice and support from our peers, those who have been through exactly what we are going through. Zebras can sometimes find this a bit more difficult since we are by definition, rare. So, we tend to turn to social media outlets to find others in our situation.
The internet and social media have made it possible for rare disease sufferers to more easily connect with others around the world who have the same condition. We can provide support for each other, discuss different treatment options, and be a soundboard for when we have to make difficult medical decisions. Online “Spoonie” communities have popped up everywhere to help people with all kinds of ailments cope. There are communities for EDS, Mitochondrial Disease, Dysautonomia, POTS, Lyme Disease, Fibromyalgia, and so many more. Many members of these communities say that without the support of their online friends they would feel isolated and misunderstood by everyone. But what do you do when you have such a rare diagnosis that even the online communities for rare diseases don’t know what it is?
This is the situation in which I find myself. I have a metabolic disorder that inhibits my ability to process certain protiens. It also causes mitochondrial dysfunction. It’s symptoms are similar to those of mitochondrial myopathy, chronic fatigue syndrome, fibromyalgia, dysautonomia, gastroparesis, POTS, and many more. My disorder is what is known as an Organic Aciduria. There are many forms of organic acidurias, so I went to the Organic Aciduria Association to try to find some answers. I sent a message to the organization about my condition trying to get some answers, but the response I received in return was disappointing. I was told that my diagnosis, 3-Methylglutaconic Aciduria, is one of the rarest of the acidurias, and they had no information for me. No Information!? How could that be? I was told to reach out to the members to see if anyone had experience dealing with it. I have yet to find anyone.
So what does a Zebra do when it doesn’t look like any of the other Zebras? Where do the rarest of the rare go when they need support? Don’t get me wrong, the other Zebras play nicely. They try to support in ways that they can, they add me to their groups and lists, and chat with me. They do their best, but when it comes down to it I am still the only one in the group who doesn’t quite belong. I don’t have a group I can call mine.
When you have a chronic, debilitating illness you can become isolated from the rest of the world. It’s easy to fall into a depression without proper support. Having a sense of belonging to a bigger community is critical. That’s what so many “spoonies” have found through social media. I have found that although I may have people who are supportive, I have yet to find anyone who truly understands. I am the herdless Zebra, and regardless of how much support you have, without a herd you are still in this alone.
The thing about living with chronic illnesses is they are never static. Every day symptoms wax and wane. Some days are better than others, but the symptoms are always present. However, sometimes changes happen when you just know that it is a stage of evolution in your illness that will change how you manage each day for good. How do you handle disease progression, knowing that from this day forward things will likely not be the same again?
For me, it seems like every time I have a significant medical event, flare, or emergency my symptoms progress with more permanency. My most recent hospitalization has left me feeling as if this again is a sign of disease progression from which my strength will not fully rebound. The fatigue, weakness, and pain have increased; and although some days are still better than others, my best days are still worse than ever before. I have lived with this illness for long enough to know that this is another turning point in my life.
How does one cope with the knowledge that you are living with a chronic, progressive illness that will continue to require alterations in how you manage life? How does one move past the pain of losing more and more control over your body? How does one manage the fear of losing more independence and requiring increased help from others? These are things that healthy people can never fully understand.
Illness progression can evoke feelings of loss, anger, hopelessness, and fear. It causes feelings of uncertainty about how you will continue on with your life. What does my future hold? What will my level of functioning be in a year, five years, and ten years down the road? If those of us living with chronic, progressive illnesses focus on our uncertain future we miss out on our life in the present. It can result in depression, isolation, and loss of hope. We must remind ourselves that we have a choice to make. We can give up, or we can choose to accept our limitations and focus on the abilities we still have.
I still get angry at times when I cannot participate in activities I once used to enjoy. I have moments of weakness, fear of what my future holds, and thoughts evoking depression over the pain and losses I’ve endured. We all experience these feelings from time to time when living with chronic illness. It is in these moments when we are most vulnerable, and in need of the most support. I’m happy to say that regardless of my setbacks, I will still persevere. I don’t know what my medical future will look like, but with the support of my family and friends I will continue to live, love, and look to the future with strength to carry on.
Knowledge is power, especially when you are living with a chronic illness. I was reminded of the importance of educating myself and my loved ones about my illness and my needs this week when I ended up in the emergency room with unexplained, life threatening symptoms.
When you have a rare illness such as mitochondrial disease, like myself, you can expect to be on the receiving end of dumbfounded looks from doctors and nurses in nearly every medical facility you frequent. The fact of the matter is that you and your loved ones are probably the most knowledgeable people in the room when it comes to your illness and your needs. Doctors just are not familiar with how to manage rare diseases in these situations. This illustrates the importance of understanding fully how your illness affects you, and what your needs are in emergency situations.
Understanding your needs is only half of the equation, however. If you cannot effectively advocate for yourself, or identify a trustworthy companion to advocate on your behalf, then you will never receive the care you require. You must be vigilant in emergency situations or your life literally could be at risk. In my case, I must remind the medical personnel not to give me traditional IV fluid each time the IV bag is replaced because it is toxic to my system. I am required to monitor my own medications due to the constant mistakes in medication management in the hospital setting. I need to ensure they do not use traditional anesthesia protocol on me as it can be fatal due to my illness. A simple trip to the emergency room can turn into a life threatening mistake if I or my spouse are not vigilant in ensuring that the medical team are fully educated about my illness and my needs at all times.
They don’t always want to listen. Many doctors feel as if they know best, and they aren’t here to take orders from the patient. It is imperative though, if you have a life threatening chronic illness that you advocate for yourself regardless of the feelings of the medical staff. If you are not receiving the appropriate care you require then it is best to seek alternate care elsewhere. Take your medical care into your own hands and make sure you know what your needs are. You are your best doctor.
When you live with a chronic, debilitating illness you likely share common symptoms of pain and fatigue, but you probably also understand the often overlooked symptom of loneliness. The resulting isolation that inevitably accompanies anyone carrying the burden of living with a chronic illness is often the most painful and difficult effect of chronic illness one must face.
I find myself struggling with this symptom the most on this day. New Year’s Eve is one of my favorite holidays. I used to love getting together with family and/or friends and ringing in the new year with fun and fellowship with those I care about. I look forward to watching that glamorous shining ball drop slowly from the tower while we count down to the upcoming year waiting for that first kiss of the year with my wonderful husband. I loved wistfully dreaming with friends about what the future may hold for the following year, hoping that next year will be better than the last. It was the end of a chapter and the beginning of a new adventure, and tonight I find myself closing this chapter alone because of this stupid thing called mitochondrial disease.
Chronic illness doesn’t just take away your physical abilities. It doesn’t just make your mind less sharp. It seeps its way into every fiber of your soul, and every aspect of your life. It makes your friends slowly forget who you are. They lose your number and forget where you live. They forget you can’t always go out but never come over, and therefore you merely disappear from existence. I’m so grateful for my husband who will always be by my side supporting me, but with his job I find myself often alone during the most joyous of occasions. New Year’s Eve, Christmas, July 4th, always alone. Alone with only my pain to keep me company. Sometimes the loneliness hurts worse than the pain, but the pain always causes the loneliness. Maybe next year will be better.
It’s Thanksgiving time. A time to give thanks for our family, our friends, our happiness, our freedom, and our health. This year my health has monopolized the majority of my attention. The decline in functioning and increase in medical needs I have experienced this year has resulted in life altering events. Surgeries, medical procedures, tests, therapy, medical equipment, and a pile of medications have been my reality. I have gone from being a successful, working professional to an unemployed person fighting for disability benefits, and fighting to stay ahead of the ever changing symptoms wreaking havoc on my body. It is safe to say that I am in the worst shape of my life. After losing my ability to work, having my financial stability hanging on by a thread, and being in the worst pain and misery in my 33 years, I would have thought I would be a very unpleasant person to be around. In reality, however, I am happier now than I have ever been before. There are many people who have helped me get to where I am today; without the support of my husband and my parents I would not be the woman I am now. However, I have to give thanks to uncle Steve for teaching me the vital skill of how to live happily with a chronic, debilitating disability. Without his guidance I don’t know that I would have been prepared to take this journey.
As a child I was strong, energetic, and full of life. When I was with you, you were the weak one, but you never let that slow you down. You taught me that no matter what your limitations are you can still be active and productive, and follow your dreams. I remember going to the zoo where you volunteered- teaching people about snakes, and joining you at the Muscular Dystrophy camp where you were a mentor to so many of the younger campers. I remember going to the lake and fishing, boating, and frog hunting. I remember picking raspberries, and holding you as we traversed down the steep, rocky hill so you wouldn’t fall out of your wheelchair. We had so many adventures together; too many to even think about listing. I also remember those serious, late night talks we would have while eating Double-Stuffed Oreo cookies that you had me sneak out of Grandma’s kitchen because your medicine left a bad taste in your mouth. (Mine does that too.) I cherish those moments the most.
As I grew older you grew weaker. I watched as your life became more and more fragile with every passing year. The hospital visits became more frequent, and the nursing staff and doctors came to know us well. There was always a party when Steve was on the floor. Even in your weakest moments you showed grace and humility, and the utmost patience. You relied on so many people just to survive each and every day, and you humbly accepted the help you were given, forgave mistakes, and patiently waited if your needs could not be met right away. Through it all you had a smile on your face, and were always ready with a good joke to lighten the mood.
Neither of us knew it at the time, but all of these experiences were life lessons that would play a vital role in my future happiness. Nobody had anticipated that at the age of 16 I would begin to show signs of some sort of disability, starting me on a downward spiral into a medical nightmare, to find out in the end I too have a neuromuscular disease. How I wish I could have had you there with me through that painful struggle of finding a diagnosis. How I longed for someone who could remotely understand how I felt. How I hoped I would find someone to talk to who would listen, truly listen, but by that time you were already gone. I didn’t have the insight early on to be able to look back on all the lessons I had learned from you, but as I grow older I am able to fully appreciate the experiences we had together, and better learn from them.
Over the years I have come to understand the importance of having patience (because we all know that in the medical world nothing moves quickly). You always showed patience with your medical staff. I am doing my best to be patient like you. From you I learn how to speak up for what I need, and educate my doctors because sometimes I am the expert on my disability. Your case was so unique that many times you were in the same situation. You teach me how to advocate for myself with poise and dignity. I have a hard time admitting I can’t do something. You didn’t have that option. If you didn’t ask for help then you didn’t get out of bed. You remind me to be more humble and ask for help when I need it. And most importantly, you have let me know that it is ok to just be me, and that being me is perfect. You instilled in me the understanding that regardless of a person’s disability, we are all still worthy and able to make a difference. You teach me not to worry about what anyone else thinks, and to just be me. All of these things you did without even knowing you did it. You did it by just being you, and by being a great uncle, mentor, and friend. Now that I have my diagnosis the healing can begin. My disease can’t be cured, and my symptoms may get worse, but I will be happy because you have taught me how. I can stop fighting and start living again, and with the skills I learned from you I can finally be free.
It has been nearly 18 years since you passed away, but you remain in my heart and my mind always. I remember the day clearly, and I knew you were gone before my parents even told me the news. We had a unique bond that differed from your relationship with my brothers. Ours was special, ours was a bond that was deeper than words can explain. You may call it fate that we bonded as we did. I look back on our relationship and I am grateful for everything you taught me about how to live with a disability. It has been a long journey, but you have been with me through it all. The memories of us have helped push me through the hard times. It has been a struggle, and will continue to be challenging, but I know that I have the skills I need to make it through.
I never got the chance to say good-bye, but that is ok because with a bond like ours good-byes are not needed. You are always in my heart and will always be with me. I do miss seeing you though. I want to thank you for spending the time to teach me what I needed to know to live successfully with my disability while we had our time together. I will continue to try to help others in need of support or guidance because, as you said,
“If part of what I’ve learned about living with a disease- an illness- can benefit other people or change the way they look at people with an illness, then it makes what I do worthwhile.” (Steven Arnold 1968-1998)
Even though this disability is a Major Payne, I will live well and Die Hard, and continue to support research for The Cure. (Three of our favorite night time movies to watch together.)
Today is Election Day 2016. It has been an epic Trump -vs- Clinton battle during this campaign. The country seems divided, media bias has fueled anger and hostility toward each candidate. People with disabilities have been highlighted multiple times throughout the campaign on both sides. How have those stories affected your vote?
I may get some negative feedback from this post, but I believe this is something that needs to be said. First and foremost I need to say that I do not particularly endorse either candidate. I feel that both candidates have some positive and MANY negative qualities, but neither is necessarily suited to be the next president of the United States. That being said, media coverage of this campaign has been extremely biased, and I feel it has been overly biased when it comes to discussing disability issues.
Most recently, there was a story of a 12 year old boy with cerebral palsy who was asked to leave a Trump rally. News stories headlined that “Donald Trump ejects 12 year old boy with cerebral palsy from rally”. This headline makes Mr. Trump look like he went up to a small child in a wheelchair and threw him out of his rally for no reason. It is unfair to paint that picture when in reality the boy and his family were there to protest the rally, and were disrupting the event. Mr. Trump had them removed by security just as he would any other protester who was disrupting the event.
Now you can’t tell me that if the same thing happened at Mrs. Clinton’s rally she wouldn’t have done the same thing. In reality, Mr. Trump acted in a way I want a leader to act. He didn’t parade a poor little kid in a wheelchair across a stage with a sad little story about his life to get sympathy votes. (Can we say the same about Hillary?) He treated the kid in the wheelchair like he would any other citizen. He treated him like an equal, and that is what we have been asking for. This is just one example of how people with disabilities have been used in the media to sway the people’s votes this year.
With regard to the allegations of how the Trump supporters reacted to this individual, I am ashamed. Our society should be better than that. We all have the right to express our opinions, but we don’t have the right to resort to violence or personal attacks. Kicking someone’s wheelchair is the same as kicking the person. The wheelchair is an extension of the person, and any attack like that is uncalled for. You should be ashamed of yourselves. I am happy that this young man is getting involved in current events, and my hope is that this event does not deter him from continuing his involvement.
When you vote today make sure you vote for the right reason. There has been so much hate, racism, lies, and bias swimming around in our media. Don’t allow your heart to absorb all that negativity and change who you are. Whether you vote for Trump or Clinton or someone else, do it because you believe it is the best choice for our country, not because the media or anyone else told you to.
No matter the outcome, we will still be Americans come tomorrow, and we will still be facing the same issues we face today. We need to come together and make the changes we wish to see ourselves. We cannot rely on one person in a big White House to fix everything. It is up to us to make the changes. Vote for change in America regardless of who you vote for president.
When You Fear Losing Your Identity When You Have to Stop Working Due to Your Disability
“Nice to meet you. What do you do?” That question is asked so many times in our society that it has caused us to identify ourselves by what we choose to do for employment. But what if you cannot work? How do you identify yourself?
This is a question I have been struggling with for a while now. I have been in the professional world for over 10 years, and I have worked at least part time since I was 15 years old. With a master’s degree, I planned to be a working professional until I retired. However, my disability appears to have other plans for me. Now I must come to terms with the fact that I may not be able to answer the question, “What do you do?” much longer. Who am I? What will I be then? Just another person with a disability? Is that what defines me now?
The disabled world has been a part of my life since birth. Not because of my own disability, but because of family members. I grew up with an uncle and two cousins with spinal muscular atrophy type II. I remember the many years of volunteering at the local MDA Telethon every Labor Day weekend. I visited the MDA camp every summer with my uncle as I got older, and met multiple friends. It is there where I met my future wheelchair basketball coach, who was also a counselor there. At age 16 I became a counselor at the MDA camp; unbeknownst to me, 15 years later I would be given a diagnosis of mitochondrial disease, a form of muscular dystrophy.
I began volunteering for a children’s recreational rehabilitation program teaching adaptive sports to kids with disabilities at age 15, and when I began showing symptoms of my own disability, I too began playing wheelchair basketball. After graduation I went to college for social work. Once I graduated, I began my career as a mental health case manager working with individuals with mental illness. I enjoyed that career for five years before transitioning to therapeutic foster care working with children with disabilities in the foster care system.
I then transitioned to my current position as a probation officer after obtaining my master’s degree in Forensic Psychology. Here, I work with individuals with disabilities on a daily basis. It is astounding how many individuals with disabilities are involved in the criminal justice system. This system is not the right place for many of these individuals, and change must begin with an in depth look at our treatment providers, but that is a different topic altogether. After five years of service with the probation department, I have finally come to the end of my ability to continue. This has been a very difficult decision for me to make.
I must admit, I have always had trouble with the idea of being unable to work. I have helped so many people apply for and obtain Social Security Disability, but I have always thought it was something I would never do for myself. To be honest, part of me almost felt as if I was better than that. I felt as if I had the education and training to overcome whatever obstacle would come my way, and I would never be the person who would say, “I’m on disability.”
Even as a social worker, I have my own biases about people who live their lives on social security. Maybe it’s because I have worked with some people that I have felt were using it as a cop out. I will admit I have thought, “Well if I can work, why can’t you? Surely you can’t be worse off than me.” Maybe it was my age, maybe it was my inexperience, or maybe it was my subconscious fear of my own limitations surrounding work. I have come to realize that I am no more qualified to determine how disabled someone else is than they are to determine how disabled I am. A person’s disabilities are their own struggles that nobody else can fully understand.
I worked until I could work no more, and then I worked some more. I was in denial, and I pushed myself to the point of exhaustion. Sick days became more frequent, productivity became slower, mistakes happened more frequently, and I was reaching my limit. More and more symptoms began arising, and my symptoms were increasing in frequency and intensity. I had to make a decision, and that decision was I could no longer return to work. The paperwork for long-term disability was started. The application for SSDI began. I had become one of my former clients. What was happening to me? I was losing my sense of self. I was losing my purpose in life. Who was I now? How do I answer the question, “What do you do?”
I’ve come to understand that our society has placed value in the wrong place. We need to focus on the person, not what they do or what they can do. I have bought into the idea that my job defines me for many years. I have pushed through pain and suffering because of the fear of losing my identity if I am not working. I would be a failure. I would be giving in to my disability. I would be nobody. These are all thoughts I had, and sometimes they still pop up every now and then.
It took a lot of soul-searching and support from my husband to finally come to terms with the fact that listening to my body and understanding my limitations is not giving up. I lose no part of myself by not working, because my job does not define me. I am not my job, I am Me. I am a loving wife, I am caring, I am an animal lover, I am adventurous, I am funny, I am family-oriented. I am Me, and nothing can change that. My job and my disability are only parts of my life; they do not define me. Don’t let any single part of your life define you, just be you!
Don’t think about what you can’t do; Excel in what you can do!
To embrace your disability is to embrace yourself, love yourself, and know that your are great.
I have met so many people who have told me they wish they would have just died. I’m talking about those who either become disabled due to an accident or illness sometime later in life. Most individuals born with a disability are able to adapt so much easier, and are able to embrace their disability as an integral part of them at an early age. This doesn’t mean they don’t have struggles, or have days when they may say, “I wish I could do that”, but overall, many children born with disabilities are much more accepting of themselves at an earlier age.
Now, we adults and older children, we are a different story. I will admit, I had my days when I thought, “It would be better if I wasn’t here”. The thought of not having to go through the daily pain, the stares, the negativity and the loss was appealing. The loss…. It is so difficult to go through the loss. The loss of what once was. The loss of who you once were. The loss of what you thought you would become. The broken dreams, the heartache, the reality that there are going to be things that I may never do again. These are all feelings that can lead someone to the level of despair that would make them say “It would have been better if I had died”.
I’m here to tell you that you are wrong!
No matter what your situation is, it has a purpose. You have a purpose. You may be new to this disabled community, and that is okay. We don’t judge. We will embrace you and show you the ropes if you just let down your guard, break down those walls, and let us in. I know how hard it is because I was there. I put up those walls and I didn’t want anyone to know what I was going through. I wanted to pretend it was all okay. I didn’t want to accept it. I felt like a friend of mine does right now who always says, “If I learn how to do that, then I am giving in to this chair”. You aren’t giving in by embracing the wheelchair, the walker, the cane, the braces, the seeing eye dog, the hearing aids, the prosthetic, the depends, the catheters, the shunts, the implants, the sign language, and on and on. It isn’t giving in, or giving up. Learning to use the tools around you to live an active, healthy life is just part of the process of learning to love yourself again. You must learn to love you, and that means every part of you. You can’t be embarrassed about who you are and what your needs are. The people who truly love you don’t care about the chair, the catheters, the dogs, the hearing aids, the braces, the depends, etc. They don’t care, and you shouldn’t either. It took me a LONG time to learn that. After I learned to embrace it I realized that I was the only one holding me back because everyone else had already accepted me.
At some point we all need to learn to let go of what we once were, and learn to love who we are now. Embrace all that we are because what we can be is amazing. I have met so many amazing people because of my disability. My disability has opened the door to an entire world that didn’t exist for me before. It has made me a better person. I can relate to my relative who I loved dearly who went through similar struggles and did amazing things. I can better understand how he felt on some level, and maybe carry on his legacy of helping others. I have been able to reach out to children who are struggling just as I did, and I have seen them conquer their struggle while learning to embrace their disability.
I have met so many people who have been injured, or have a debilitating disease that began later in life, who have told me if they had a choice to go back to who they were before they wouldn’t. They have embraced their new identity, and they have learned that there was a reason for it. They have seen the good things that have come from their experiences, and they don’t want to change it. It took some of them years to come to that realization, and some of them went through very dark times before they got there. Unfortunately, being in that place of despair can lead to so many dangerous things such as alcoholism, substance abuse, risky behaviors, depression, and suicide. We need to come together as a community and help each other through that difficult time so the transition isn’t so difficult for the next person. These individuals who have learned to embrace their disability are necessarily happy with every aspect of their disability. Everyone has daily struggles that they must overcome regularly when living with a disability, and I am not discounting that. But, those daily struggles make us stronger, and over time you will begin to see the good things that will come from your situation.
I don’t know what my future holds. It is scary to think about what my disease could do to me. I don’t know how it will progress, but I do know that no matter what, I will embrace it and know there is a reason to live. Each and every one of us has to learn to let go of the person we thought we were going to become, and make a new future for ourselves. It doesn’t mean that it is an inferior future to the one for which we were previously on track, it is just a different one. One day, you may just come to realize that your new future is the one that was meant for you all along.
I consider myself to be fairly independent, but I will admit that I rely on my husband a lot. He is the best person in my life, and I owe a lot to him. He gives me strength when I feel like I cannot go any further. He helps me to take care of the house and other tasks that I cannot always handle. He has patience when I am not feeling well. He is strong, steady, and reliable. I know that no matter what he will always be there. Without him, my life would be much harder, and I would be without my best friend.
I think many people with disabilities have a special someone who they rely on for strength, encouragement, and help. What we don’t always think about is what we will do if that person is no longer able to help care for us. What happens if they become ill, disabled, or even pass away? We don’t like to think about it, but it is something we all need to consider. What will I do if he is suddenly unable to do what he does for me now?
Currently, my husband is recovering from surgery. Luckily, it is a simple surgery that will not cause any major issues, but it got me thinking, what will I do if he is unable to be here one day? You see, my husband has a dangerous job which requires him to put himself in harm’s way on a daily basis. When he leaves for work I never know if he will come home at the end of his shift. We aren’t in denial about this possibility, and we have talked about it often. We are both mentally prepared to make that sacrifice if necessary, but am I physically prepared? This situation has gotten me thinking. Will I be ready?
We all need a support system. We need a network of people, a community of individuals who can support us when needed. If you don’t have that support system then reach out. There are multiple agencies and networks out there to help individuals in need. If you are religious, seek support from your church community or your spiritual advisors. Make new friends through a community club or activity that interests you. It is never too late to make new friends, and these friends can be a significant source of support in times of need in the future. I have learned that once I was able to let my guard down a little it was easier to make true relationships that create a stronger bond. There is a certain type of family that comes with my husband’s job, and normally I would be the type of person that would not embrace that. I would typically shy away from others involved in that “family” because I would feel different or unacceptable. Since I have learned to let my guard down I have learned that there are people out there that are sincere, and I have formed some very strong bonds that will last a lifetime. I am confident that if, God forbid, one day my husband does not come home, that there are people in my life that I can rely on. Hopefully, you can gain that comfort and support as well.