When I was 8 years old, my mother was diagnosed with sarcoidosis; a disease that affected her health for the rest of her life, a disease that is rare and has no cure. She had breathing, vision and muscle issues from the sarcoidosis that were treated with a plethora of drugs. Some drugs were even prescribed to combat side effects of drugs that were treating various symptoms. I don’t know how she or her doctors managed to keep track of it all.
I recall one of several instances when Mom was frustrated and not feeling well when she took all of her pills, put them into two large ziploc bags and stopped taking everything it was safe to stop taking. There were so many bottles. Some large, some small, with every size pill and color you can imagine. This is what happens when you medicate symptoms of a disease. Patients eventually get frustrated and have to break the cycle of never-ending pills and the effect they have on their body.
The first five years or so after Mom’s diagnosis were the hardest for me. She was adjusting to medications almost constantly - or adjusting to being off the medications. It was a constant roller coaster ride of moods that swung from happy to angry to sad to irrational and unreasonable. I remember several times getting in trouble for something I did and her response being over-the-top and unexpected. Not that I thought I’d get away with what I’d done, but her anger on certain occasions was far beyond the norm.
I don’t know what changed after the first five years. Maybe she was able to accept what was happening to her. Perhaps her drug regime finally balanced out. Whatever the reason, I remember life being more peaceful with Mom. She had bad times, but there was less anger, less taking out the frustrations of her debilitating illness on the family.
I grew very close to her throughout the rest of my teen years and looking back through the lenses of maturity and grace, I finally saw that the woman we lived with for those five years wasn’t really her. My real mother was kind, gentle, passionate about her beliefs, but also compassionate and generous to a fault.
I wrote my mother a letter shortly after I moved to Canada. I told her what I could finally see about those first difficult years after her diagnosis. And I think we both healed any residual wounds. I don’t know what it’s like to live with chronic illness, knowing you’re not ever going to improve, but if I had to I’d want to do it with the grace and dignity that my mother showed.
Mom always protected us from the worst of her illness, including when the doctors decided she had neurosarcoidosis - I still don’t fully understand the difference. She didn’t want us to know how scared she was about the way her body refused to work properly. There were times during her years of treatment that she feared she was going to die. Sarcoidosis is not really a fatal disease; many cases have symptoms once that go away and never return. It’s much more unusual to have severe symptoms like my mother’s. But Mom didn’t feel sorry for herself.
When she had pen pals who were in worse shape (in wheelchairs or bed-ridden), she wrote them letters of support and encouragement instead of shying away, even when she feared that was the next step for her.
When her esophagus muscles stopped working, she just shrugged, chuckled and let gravity do the job.
When she had to get a handicapped sticker for her car and was stopped by self-righteous, over-zealous people who felt she was wrongly parked in the spot, she accepted it as a fact of life since her handicap was not obvious.
When she broke a couple ribs during a nasty bout of pleurisy, she did little more than mention that her chest seemed sore. She didn’t know she’d broken her ribs until months later.
When she fell while walking (and she occasionally did), she’d slowly get up and call herself a klutz while laughing it off. The truth was that her muscles were breaking down and her legs occasionally gave out on her.
When she came to Canada for the first (and last) time of her life and ended up in the hospital for half the time (including my wedding day), she never complained. She just did her best to get better and get out as quickly as possible. Fortunately, she recovered enough that the doctors gave her a temporary release to attend my wedding.
When she was on drugs a couple years before she died that made her unusually emotional and teary, she was cheered up as my husband teased her, saying, “Uh oh, she’s leaky again.”
Through each and every stage of her illness, Mom moved through life with purpose and without complaint, always willing to laugh at herself. When I think about my mom, I know that I am blessed in ways beyond measure. Because she was my mother. Because she gave me such an inspiring example. Her dignity and grace in the face of what became a lifelong challenge will always inspire me to be a better person.
This post was based on the prompt “Describe a woman who inspired YOU” from Mama Kat’s writing workshop and written in participation of Bigger Picture Moments.“A moment where you recognized the role your faith plays in your every day life. A moment where you take note of motherhood and the importance of what you are doing. A moment that made you stop and breathe in the bigness of it all. The hugeness that is life and the small moments adding up to one Bigger Picture.” Join in by linking up at Bigger Picture Blogs.