Grief

Grief is the one thing in life we are all guaranteed to experience at some stage of life. When you lose a loved one, a pet or experience any loss you will experience grief. And for those of us who live with a chronic illness/disability, we face grief on a regular basis.

The thing about grief is that it’s different for everyone and there is no manual to help fix your grief. Many of us know the stages of grief: shock/denial, anger, bargaining, depression, and acceptance. I lost my father suddenly over a year ago and I lost my beautiful Mam on New Year’s morning a few weeks ago. They were both aged 60 and my heart has been broken into a million pieces. Again, I grieve and know the stages I have yet to face. Denial and shock were my first stages as I watched my Mam die in front of my eyes. Not long after came my anger; I’d fill with rage and think to myself, “Why are both my parents dead? I’m 31 and it’s not fair”.  The thing is, it isn’t fair and sometimes life is just not fair. It doesn’t matter what age you are in life; you will always miss your loved ones when they pass. I really thought I’d be used to grief by now, but I think it’s something we will continue to re-visit throughout different stages of our lives.

I feel grief can sneak up on us and overnight our whole lives can change. Living with a chronic illness like MS, you grieve for different reasons and at different times. And because MS is so unpredictable, it really can happen literally overnight. When I was first diagnosed, I lost the ability to walk properly. My left arm and left leg would not function properly. I felt like MS and grief snuck in overnight and stole my body’s smooth function from me.

I was so embarrassed by the ataxia because people stared at me a lot. I didn’t want anyone I knew to see me like that. I went to bed one night and woke up the next day without the ability to move my left arm and leg when I wanted to. I never knew when it would or wouldn’t work. I first experienced shock/denial, but I was also incredibly sad over it. Depression too snuck into my mind and convinced me that I was an embarrassment and a burden.

Thankfully I have had a few good years and I’m in remission but that doesn’t mean that I don’t still grieve; I do. I’m sure most people with MS and other illnesses and disabilities face grief regularly and out of the blue too. I am not saying that life is bad because it really isn’t.

We all have good days and bad days. We all have problems and insecurities. The unpredictable nature of MS challenges us daily and so grief is a normal response to losing a part of yourself. I do miss and grieve for my former self. I grieve for the free-spirited spontaneous girl that I was. When you live with MS, you learn that organizing ahead of time is essential. Depending on your needs, you may have more pre-planning than your family or friends.

It can be lonely when you feel like you’re missing out or you can’t be spontaneous. For me, I can’t just plan a trip without factoring in the length of the journey and the toilet facilities. To avoid having an accident I limit how much I drink when going on long journeys. It’s the same when I’ve an event coming up. My energy levels are not the same anymore and sometimes I cancel last minute because of nerve pain or spasticity. I think it is when you feel most vulnerable that grief comes in and hits you in the face.

It's hard to see my family or friends doing things that I wish I could do spontaneously. Or seeing friends buying houses and I wish that was me. Wishing my MS didn’t get in the way of work and earning money. It’s a hard pill to swallow. Grief can be such a lonely and isolating journey but there are things that can lighten the load. For me, I know that others with MS will understand. Not because we all have the same experiences, because we don’t, but they get it because they’ve faced grief living with the same condition. The people who experience it, understand.

I think grief is a healthy response to a crap situation. Talking with other’s who understand is what has really helped me with living with MS. It is what is going to help me with the loss of my parents. I think when you are faced with grief, try to embrace it. I now embrace my feelings and let my emotions out and it makes all the difference. Sometimes speaking out and telling people how you feel can help. As Vicki Harrison said,

“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.”
 

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