I really thought that this needed to be said once more. So many people deal with this issue, and I thought that I would just be pure and honest about my own troubles and triumphs over my first ride in the wheelchair...
Thousands of people with Invisible Diseases debate over the use of a wheelchair, and what that ‘means’ for them socially and emotionally. We have received many letters from people, asking for advice on whether or not to get a wheelchair. They are often sheepish or even scared about the potential repercussions, and want to connect with others who have faced the same issue.
Dr Dolan Reports:
Ahhh, the wheelchair. I can tell you that you are not alone, my friends. I once was a professional performer and traveled the world. Long ago, I knew what the hot lights of the stage felt like on my face. I once felt the silent breath and the eager spirits of thousands of people sitting in front of me; waiting to be entertained, just before I sang my first note or danced my first step. I used to use my body to tell stories, through physical comedy and interpretive dance. I worked so hard that I danced with shin splints and I went seven days per week this way. I loved it more than anything. I was a performer and I would give it up for nothing. ...That is, until I became ill.
I now am completely housebound. I was told by far too many under educated doctors that all I needed to do was embrace the idea of physical movement and exercise. My "exercise" is now in the form of standing in the shower on my own, and walking around my house as I am able to. My “workout” happens when I create art. Though My arms often shake with fatigue and my forehead sweats when I paint or sculpt for too long. Though I absolutely love creating art, it is “exercise” for my body, and that is as far as I can physically push now.
Still, I need to go to doctor appointments, and when I do, there are often long halls and short lines to wait in. I simply cannot do this on my own two legs. Like nearly broken twigs, my legs clench and crumble in burning pain and my feet fill with hot heavy blood. My head becomes even more faint than usual and I often have to sit or even lay down in line. Obviously this is not only embarrassing, it is impractical.
A very kind Physical Therapist suggested that I get a wheelchair. She said that she was surprised that I hadn’t had one already. I was nervous about how I might be treated out in the world, if I was in a wheelchair. I worked so hard to hold onto the tiny few strands of my former healthy life. I also feared that a wheelchair might act as a personal symbol of my illness getting even worse. Have you ever gained weight, and tried desperately to fit into your smaller sized clothing, just so you could believe that you hadn’t gained thaaat much weight? It was sort of like that, only much more serious in my mind. It was a very depressing and scary feeling to face. I struggled over it for a while. But then I took a deep breath, faced my fears with a good dose of bravery, and made my decision.
Now, I have a wheelchair for when I do actually leave the house. If I need to physically push myself, it is much safer to do it at home, where I can sit or lay immediately, no matter what I am doing. When I am out of the house and being wheeled around in the wheelchair, I am able to communicate better and I can ‘last’ longer on my outings. That is definitely worth facing any uncomfortable insecurities of being looked at in a funny way. Plus, when I am in a wheelchair, most people usually don’t treat me any differently than when I am out of a wheelchair. In fact, if anything, a wheelchair makes the illness less “invisible” in a very helpful and educational way! People begin to understand the severity of the illness, and they tend to respect you more, even if they do not fully understand it.
On the rare occasions of leaving my house, I am often too weak to look up and lift my head for too long. When I can though, I make eye contact and smile at everybody. Usually, people who do not use wheelchairs don't even think about it as much as those who do use wheelchairs. I am not ashamed at all. After all, it was nothing that I did to put myself there. This illness happened to me. ...To all of us!
Sitting in a wheelchair is one way of defying the illness, and telling the world that we are not going to take this fatigue lying down! Ironically, I once thought that a wheelchair might take even more of my life away from me. On the contrary, it gave me a little piece of it back.
Do not be ashamed for being a survivor. You are a beautiful and strong example of a person who does not give up! A wheelchair, like a crutch, or a shoulder to lean on, is not a sign of weakness; it is a sign of a person willing to move forward, no matter what challenges they carry.
Dr Franky Dolan