I Have to Hold Back So Much Because of My Illness
What a rough three weeks my family has been having. I’ve had to put a hold on writing my column because of events outside of my control.
Once again, I am angry with this rare illness of mine. It not only puts a hold on my life, but it also puts a hold on the lives of my husband and daughter.
Because of my immunocompromised status, I am an easy target for contracting COVID-19. I am also more likely to be hospitalized and suffer severe illness from it, which makes it hard for those around me to live some resemblance of a normal life during the pandemic.
A close family member was diagnosed with cancer several years ago. Since then, the cancer has ravished her whole body. It has been tough watching her suffer through this.
While in the hospital, she tested positive for COVID-19. As a family, we wanted her to come home; however, the doctors notified us that until she tested negative, she would continue her stay at the hospital. Finally, the decision was made that she could be released to her home so that she could spend the last days of her life with her loved ones.
These past three weeks have put us through a test. We have been dealing daily with doctors, preparations, out-of-town relatives, and a roller coaster of emotions.
Because of my illness, my doctor advises that I not visit her at her home, for fear that I could contract COVID-19. This has put me in a predicament because she is family. I need to see her, to let her know that I am there, that we are all there.
My husband and daughter had to make the difficult decision to refrain from visiting her as well, due to my being immunocompromised. Our decisions are being plagued by my illness.
How am I supposed to be OK with this? Why do they have to stop their lives just because I have to put a hold on mine?
I don’t even know who or what to feel anger at anymore: myself, my illness, or this pandemic.
I am constantly apologizing for making everyone adjust their lives just because of my frailty. No one is asking for apologies; everyone has been supportive. It is just me, my emotional demon. I don’t want to miss out on saying my last goodbye or having the last touch or hearing her last words.
I am angry with this illness of mine.
It doesn’t matter if or when the pandemic ceases to reign over our lives. My illness will still be there, stalling my freedom from being a part of this collective society.
I am not sure if my anger is due to the emotional stress of losing yet another family member or if it has always been there, buried so deep in my mind.
I want to live as she would have lived had she been given the chance. I want to embrace my illness as she has embraced hers. I want to open the door to the daylight of my existence. I try to allow my illness to be a part of me, but at the same time, I face denial.
Every time I allow my strength to occupy this space of doubt, some event happens to question it and my courage. I have to hold back so much because of my illness, and it constantly reminds me of that.
A degree of comfort
I eventually decided to visit her from outside her home. I felt like a stranger looking in from the outside. Looking through the glass door of her home, I waved and whispered, “I love you.” She smiled and weakly waved her hand at me as she repeated the same words.
I felt a wave of so many emotions: anger, sadness, guilt, and eventually comfort.
Her smile said it all. She was the one giving me comfort, instead of my giving it to her. It felt as if she wanted me to know that all would be good. She was right where she wanted to be — with her family, her children.
She owns her illness because she understands it. She has lived with it and accepted it. She has become my inspiration, to own my illness, to live with it, to accept and respect it.
It has been a tough three weeks. My illness is still with me. It will never leave me. I respect that. The anger lingers a little, but I am a work in progress.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.