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Posted on 3. July 2014

A New Independence

By Tammie Allegro

If you mention the 4th of July to most Americans, the first thing that comes to mind is fireworks, sparklers, swimming and a barbeque. Celebrating independence is something we do as a country. After all, we live in the land of the free and the home of the brave, and there is always something to celebrate. But, what about the growing number of us who suffer from chronic illness? How do we celebrate freedom, when in many cases, our freedoms have been taken away?

For me, personally, the list of "can'ts" is shorter than the list of "cans." However, I find things daily that are becoming harder to do, and I know it is only a matter of time before the balance of my "lists" shifts. It is hard not to get depressed when I see people enjoying hobbies I once loved. Even harder for me is when my daughters ask me to make them a cake or go swimming - something simple, but often painful for me now.  

So, to keep my head up and moving forward, I have adjusted how I do things. My hope is that if I keep moving forward, I will deteriorate more slowly. I think it has helped me tremendously. Recently, we went on a family vacation. My daughters were brave and immediately wanted to jump off a small cliff into a waterfall. I sat with my feet in the water because I knew it just wasn't something I could do anymore. Then, it happened: A voice in my head said "Get up there; you can't miss this chance!" So, I jumped. Not just once; I was able to jump multiple times, and I wasn't even tired after. Rather, I felt refreshed. I am sure there are a million ways things could have gone badly, but for that moment I was living like I used to. It was an important reminder that I am not broken, just a little damaged. 

I have found that being sick has given me a lot more freedom in other areas of my life. I am much more loving and emotional. I share my feelings of love and gratitude all the time. I appreciate the urgency of living each day with a good heart. I also learned to put my "dukes" down. I used to feel the need to fight for every little thing. Now, I've learned that some things just don't require a fight. This enlightenment has also taught me to fight for the big things. It is important for me not to lose myself and my identity to my diagnosis. For that reason, I try to focus on the things I can do and not so much on the things I can't.

My favorite freedom I have gifted to myself is the freedom to let my house be messy. Growing up, I was not one to clean things. I would find any excuse not to do a chore. But, once I grew up and had a home of my own, that all changed. I love a clean house. Not much makes me happier. Since I am not wealthy, I can't afford a live-in housekeeper. But, I've finally liberated myself from feeling that if my house is messy that I am failing as a mother. Instead, I see it as a sign that I'm a better mother. No, I am not living in a pigsty. I've just stopped obsessing over the dust bunnies in the corner. I am more focused on hanging out with my girls and playing video games or playing in our pool; the dust bunnies can wait.

I watch my oldest daughter, and she is so much like me when I was her age. She is 19 going on 30, and she worries about everyone and everything. She focuses on being perfect and making everything right for everyone around her. Because of this, I don't think she gets to enjoy her life as much as I wish she could. Seeing this, I have come to realize that my illnesses free me from that mindset and allow me to be a different and, I hope, better version of myself. I'm living a life with purpose, focused on love and family - something I always wanted, but didn't think I could accomplish. This is independence that no illness can take away from me. How have you restored your own sense of independence?


Comments (3) -

Linda Thornrose
5:15 PM on Thursday, July 03, 2014

Thanks for the encouragement, Tammy.  Praying you have a blessed Independence Day weekend as we are thankful for living in a country, though far from perfect, is the best with the most personal freedoms of any on earth!  God bless you and your precious daughters.

Deb Konrad
7:42 AM on Friday, July 04, 2014

I enjoyed your article, but would like to suggest another way to declare our independence...don't refer to ourselves as "sick". In addition to having Hypogammaglobulinemia, I was also diagnosed with Non-Hodgkins Lymphoma 6 years ago...yes, I was very sick at times...both before and during treatment, but even though I have 2 incurable conditions, I do not consider myself "sick"...I have chronic conditions, not unlike a person with Diabetes....what makes our situation any worse than someone who does?

Bud Foucher
1:24 PM on Friday, July 04, 2014

Well, maybe I'm not sick in the classical sense of the word but there is something wrong with me.  I am very exhausted and poor feeling after my infusions.  Eventually I feel better, but I can't walk a half block w/o getting tired.  I had to quit being a ski instructor, a huge part of my retirement plan, until I developed balance problems.  I had my annual discussion with my therapist about my goals because Medicare has stopped paying for the year.  I have revised my goals downward.  From full recovery to just being able to walk anywhere with a cane. I will be paying until e.o.y. because of arbitrary limits set by Medicare. That's one of my entitlements that the politicians want to take away.  In the house I'm still using a walker because it is the most hazardous place I go, partly due to my 3 dogs.  Outdoors or elsewhere I get by on two arm crutches. Remember the kid in Breaking Bad? I also want to ride my horse.  Fortunately my Significant Other and her friends exercise him for me now.  Bicycling, no, it requires balance and strong legs, not in my immediate future. I have CIDP in case you are wondering.  I think it may have come from two bouts of Lyme disease, although I have no proof except Ipso Facto, Ergo, Propter Facto.  If you know what I mean. HAPPY 4TH OF JULY.  It's raining here in Eastern NY so I can't sit out on my deck surveying my acres, having a beer and throwing a ball for my Corgi to chase. Tomorrow is another day. When I awaken I'll say 'made it to another day.'  I've lived 9 years longer than my father did.

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