To Grieve or Not to Grieve

by Phil Bennett

At some point in our lives, we all encounter difficult predicaments which lead to grief and despair. Whether rich or poor, young or old, strong or weak, we can all recall instances when we were plagued by these emotions.

According to the psychiatrist Elizabeth Kübler-Ross, episodes of "grief" frequently follow a similar pattern of emotional responses — denial, anger, bargaining, depression and acceptance. She calls these the five stages of grieving.

I can relate to these five stages, as Im sure you can, because my disability pushes me into these feelings every day.

Im a 19-year old college student in California. I wake up at 6:30 every morning, I have a shower, I go to school, I come home, I do homework and I go to bed. A normal daily routine.

But it doesnt always work as fluidly as I hope. I have Friedreichs ataxia, a genetic neuromuscular disorder that damages sensory and motor nerves, making it difficult to balance, walk or speak coherently. Hence, I use a manual wheelchair.

Floored by Friedreichs

FA complicates my "normal" daily routine. I might end up in a heap on the floor when a transfer from my bed to my wheelchair doesnt work out as well as I had hoped. I go through those five stages of grieving every time this happens.

At first, I might deny that I need help, even if someone offers it. If I cant haul myself up off the floor to get back into my wheelchair, Ill get angry. If someone offers assistance, I might take out my anger and frustration on that person. If nobodys around, Ill find a way to take out my anger on anything I can (my bathroom door still bears the dents from our last "dispute").

After I settle down, I might try to bargain my way out of my predicament — say a little prayer, ask God to give me strength, whatever the situation allows. After that, I plunge into depression: I might cry, feel helpless and inferior, or even go as far as to consider suicide.

Ill eventually snap out of my sadness and move toward acceptance. Ill accept the fact that I need someones help and call a friend or neighbor or family member, instead of sitting on the floor all day, battling my own pride.

Grieving the Diagnosis

Phil Bennett in his high school letter jacket

A cycle of grieving can take months, even years. I was diagnosed with Friedreichs ataxia when I was 10 years old. I dont think I reached the acceptance stage until I was 16 or so. For six years, I trudged through those first four stages:

Denial: "The diagnosis must be wrong." Anger: directed at my parents, the doctors, even God. Bargaining: I begged God to miraculously heal me. Depression: I chose solitude and isolation to hide my feelings of sadness, because "nobody understands."

Now, finally, I think Im at the point of acceptance. I know that my nerves are gradually deteriorating, and I know that FA may someday kill me, but life is still worth living. I just have to take advantage of the blessings in my life and ignore my own faults, until that day comes.

Grieving a Loss of Ability

Friedreichs ataxia involves a progressive loss of balance and coordination, so my walking slowly got worse, and I stumbled around like a drunkard because of it. By age 12, Id progressed to the point that my walking was becoming a liability, both for myself and for any unfortunate person I used as a support beam.

My parents strongly suggested that I consider using a wheelchair. Of course, I totally denied needing one. Then, when things beyond my control progressed further, I got angry about it. When my parents said I needed walking assistance, I became livid. I regressed to cursing at them and making them feel guilty, accomplishing nothing except venting my hostility.

Then I began to bargain. At this point, my parents had already bought the wheelchair Id reluctantly picked out. At first, I left it in the hall closet — never even looked at it. Then I agreed to use it at home, but pleaded not to be forced to use it at school.

After a few months, one of my teachers began pressuring me to use the wheelchair at school. I pleaded with my parents some more, and we agreed that Id use it only after school. That worked for the time being. My teacher kept hounding me, my friends kept nagging at me, and within a few more months I was using the wheelchair all the time.

This was about when depression hit. I felt alone and discriminated against, worried that the wheelchair caused my friends to label me as a vulnerable, needy individual. I felt as if everyone would always be staring at the wheelchair itself, and in turn I wouldnt receive any of the human respect that brings meaning to our lives.

In fact, friends as well as strangers have proven to be generally accommodating and respectful. It took me years to get past this paranoia, past this depression, and to accept myself for what I am, regardless of whether my identity includes a wheelchair.

Trying and Winning

In my junior year in high school, with encouragement from my friends, I decided to join the schools track and field team, just for kicks. I went through those stages again. Before I joined the team, I was in denial — "Theres no way I can do this sport." In the end, curiosity got the best of me, so I joined the team.

I immediately felt inferior when I started throwing a shot and a discus at practice, because my friends throws soared about 10 times farther than mine. I couldnt help feeling frustrated and angry about this, and venting these emotions on teammates. Then bargaining — I wanted to find a way to get better, but steroids werent an option. From there, I trudged through depression — "I suck at this" and "I look like an idiot" and "Why bother?" But while I found myself in despair, my friends and coaches kept pushing me onward.

Sometime during my second season, I finally reached acceptance. I still sucked, but I was playing for love of the game, not for points earned at competitions. At the end of my senior year, I received an unexpected reward — a varsity letter. To me, this served not only as an award for excelling in a sport, but as a reward for reaching the stage of acceptance.

Grieving for Others

This spring I attended a national conference about ataxia. I had a blast, and I dreaded the inevitability of the weekend coming to an end. But I also felt a novel emotion, one my parents live with and deal with daily: Despair.

At earlier conferences, Id been busy searching for my own self-identity regarding Friedreichs ataxia, and I was going through those five repetitious stages of grieving over my diagnosis, my life and ataxia in general. This year, I felt sadness, even guilt, as I looked at others with neuromuscular diseases, and for the first time I saw beyond my own hardships and into theirs.

I had finally accepted my own FA; I had reached that final stage of grief over the diagnosis. But I was immediately greeted by the commencement of another cycle of grieving — this time, for others. My struggle with a neuromuscular disorder prompts the cycle to find a way to renew itself, even from unexpected sources.

From diagnosis to fatality, in conditions ranging from emphysema to ataxia, our constant battle for independence and well-being leaves us open to an opportunity for grief. These opportunities add up to more than our fair share of grieving.

Undoubtedly, youve experienced cycles of grief triggered by your neuromuscular disease. Completing the process and reaching acceptance is never easy; it can be immensely difficult and time-consuming. But its worth it. Its the reward for going through the pain.

I expect Ill grieve again as more changes occur with the progression of my FA. But it helps to know theres an end to the painful emotions. Going through the stages of grief to the point of acceptance completes that inner search for self-identity. It improves your self-esteem, and it establishes your self-worth.

Phil Bennett has lived in Fremont, Calif., all his life. Hes a sophomore at Chabot College in Hayward, Calif. He plans to pursue a graduate degree in psychology.