Thoughts on having a disabled sonby Susan Moreno on May. 16, 2010, under Health
This week a good friend of mine went out of town to her sister’s wedding. She almost didn’t make it because her 30 something son, who lives with her and has advanced multiple sclerosis, had fallen out of his electric wheel chair onto a busy street while on his way to a doctor’s appointment. The doctor in the emergency room thought the cause may have been dehydration, but in his fragile state, his Mom wasn’t sure that was the only reason. In any case, she was going to cancel her trip until I offered to stay with him while she was gone for the week helping her sister with the wedding. Both of us had been single Moms and I totally understood her situation.
As I sit here today and reflect on how this week has gone, I can’t help but compare assisting a young man with a physical illness like MS and what it was like assisting my disabled adult son when he was alive.
As most of you know, my son, Daniel, was diagnosed with schizophrenia when he was 18 years old and died by suicide when he was almost 24. (Disablity is defined as: a physical or mental impairment that substantially limits one or more of the major life activities of such individual) In the last few years of his life we spent much of the time together, going to movies, going out for meals, visiting family and some traveling together.
So much of our life together was similar to the life this young man’s Mother currently has with him, so I thought it might be interesting to compare them. (from my perspective only)
- Both young men were stricken with their illnesses in early adulthood just as most young people are stepping out into independence and advanced education or careers.
- When a young person becomes seriously ill their lives can become very lonely. Other people the same age are busy and don’t seem to be interested in spending time with someone with a disability. I used to think that my son had lost his friends due to their inability to accept his mental illness, now I wonder if it’s not just because of a disability in general. In my eyes, no matter how ill my son had become, he still was the loving, compassionate, intelligent person he had always been. I came to undersand that we would experience frequent times when he was more symptomatic than other times – something that mellowed when he was getting proper medical care.
- It’s difficult as a Mom not to treat an adult son with a disability like a child. We tend to over-protect and try to control their lives so they don’t experience anything that might hurt them physically or emotionally.
- It’s natural for us to “feel their pain” or feel guilty when they are hurt – either physically or emotionally. “Could I have done something different to change the outcome,” constantly plays over in our minds.
- Are they eating well balanced meals? Getting enough exercise? Are they on the most beneficial medication? Getting enough qualilty sleep?
- Health care – whether mental or physical - can be a challenge. The paper work, the referral process, finding the right doctor, etc can be overwhelming. Some say the public health system is in shambles and a person with a disabililty has to jump through hoops in order to get proper care. I’m here to tell you that the private system isn’t much better. Advocating for a disabled loved one can be a full time job.
The one big difference – you couldn’t see Daniel’s disability. That lead some people to believe that his chronic, life changing illness wasn’t as real or as “bad” as someone with a physical disability. ( think some people forget the head is connected to the body!) The reality is that mental illness causes more disability than any other illness, but with proper medical treatment recovery is possible.