These past few years my health has monopolized the majority of my attention. The decline in functioning and increase in medical needs I have experienced have 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 receiving 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 35 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 friends 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 our long walks, 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 that 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 wished I had 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 tought 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 taught 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 20 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 way. Our relationship 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 because of what you taught me.
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.)