Jenell Gordon
Confessions of Survival: Outside My Comfort Zone
Well, I say to myself, I am definitely out of my comfort zone. Living in a long-term care facility as a quadriplegic, has become THE major challenge of my life! I openly confess that I am stronger and wiser and my faith in God has grown. Yet, it has been a long, hard road. As of September 10, 2010, I have been a patient/resident at this hospital for 7 years, 6 months and 21 days.
Just how did I become a quadriplegic in a wheelchair? On January 7, 1997, at the age of 31, I sustained nine-hour brain surgery to remove a cerebral arteriovenous malformation (AVM). My doctor prescribed intensive and aggressive physical therapy but my health insurance allowed only two weeks of physical therapy. I was transferred via air ambulance from a rehabilitation hospital in Connecticut to a nursing home in Virginia. This facility was designed primarily for the elderly and provided custodial care only. My parents and I had no assistance in finding an appropriate facility and I was there for one year. My parents found help outside the facility.
We believe that in an effort to save money, my health insurance company committed a crime by jeopardizing my health and violating my human rights! As a result, at age 44 and after 13 years, I have the same post-operative deficits. One may think that a past of such gross neglect would make me bitter towards life. On the contrary, I feel zeal for life. I’m very zealous about living! I believe I will fully and completely recover from brain surgery. What is impossible with men is possible with God according to Luke 18:27. It’s a matter of faith.
Outside of my comfort zone and aside from my faith, this hospital has brought a new experience to my life … isolation! I’ve felt isolated here for several reasons. One reason is rather expected because I’m not walking. Without the usual movement of my legs and feet, in a gait, with my arms swinging, I don’t get to feel the floor below me. I miss touching the floor with my feet. Now, I am confined to a bed! I’ve heard of a person being confined to a wheelchair. But nobody says anything about being confined to a bed. I spend 18 to 20 hours every day on a bed.
Oftentimes, I pray to God to give me the strength I need at this time. And I encourage myself with affirmations like, “I will survive this experience.” On the other hand, I do not feel confined in either of my wheelchairs. I feel very free! I can go places and see people, even in the community. When I go in this facility’s recreation room, I engage in conversations with the people I see. These conversations wouldn’t be possible without my Vanguard (my augmentative and alternative communication device). It has improved my quality of life. What a blessing! It is my lifeline to the world and because I can now communicate, I have more visitors! I love the Vanguard!
No, I’m not jealous of normal functioning people. I absolutely LOVE being alive as Jenell. However, I have been separated from three things that are essential parts to being Jenell. I’m separated from the radio, food, and movement.
Radio
It is important to note that long-term care facilities “house” television sets in each room. Radios require individual attention and there is very limited staff to help operate them. I love listening to the radio and 40’s music is my favorite. As a sales intern at a trusted, oldies radio station in 1989 I was paid to listen to the radio. What a dream job!
Food
I do not consume food or drinks by mouth. A few months after my brain surgery, I received a gastrostomy tube, a.k.a., g-tube. I love to smell food. I love to see food and I love to talk about food. For years, I have been watching the shows on the Food Network on a daily basis. I’ve learned to live without food consumed by mouth.
Movement
Thirdly, I have feelings of separation from movement. You see, I virtually assume the same position day after day after day. When I’m in bed, my left arm is supported by pillows and my legs are extended. When I’m in my power wheelchair, for instance, my left arm is in an arm trough and bent. The only body parts that move are my head, my right arm, and my right hand. On Sundays and Wednesdays, my dad assists me with range-of-motion exercises to help me maintain strength, agility, and flexibility in my limbs. Health insurance will not pay for this needed service. And there is no staff member available. But I’ve learned to live without movement.
Now, it’s all about joy.
I have nothing but pure joy. I can see my hope, especially when my parents come to visit me. They arrive in my room like clockwork. They are truly a blessing. For example, they take me for my out-of-the-building doctor appointments and other things too numerous to mention. My love for my parents is enormous. My mother’s very beautiful smile is something I love to see. And the sound of my father’s laughter is music to my ears. God’s love and wisdom are demonstrated everyday as my parents support me. I’m blessed with friends and family who support me as well. Their consistent visits enable me to gain healing. They help me reach my goals. There are four friends who consistently visit weekly or monthly. It’s very good to know they care like they do because I need them! I need God, Jesus, my parents, my family, my friends, and the interested citizens of the world.
In addition to God, Jesus, my parents, my family, and my friends, there’s TV! God bless the invention of television! It is my “go to “source for information about weather, music, and what’s new, etc. I’m interested in information locally, nationally, and internationally. Television has helped me combat those feelings of isolation. I’m able to speak on different topics with knowledge and accuracy. Daily I read the newspaper, but nothing compares to TV as an information source, in my opinion. Television provides more than just entertainment. It’s my connection to the outside world … beyond this building.
One can imagine how I felt when I realized the advances in technology could pass me by. For instance, I can’t operate and do not have any of the popular items including a cell phone, a Blackberry, an IPOD, or an MP3 player. What a wonderful surprise when the Director of Rehabilitation at this facility, and some of her staff, presented me with a Hewlett-Packard computer. One can only imagine my elation! Now, I can Google any subject, visit any web site, chat online with contacts, compose a composition in a Word document, and of course … I can send e-mails to my friends and family! I have a Facebook account, too. This is possible because of a special attachment that fits into the USB port of my PC (personal computer). It’s a cord that connects my Vanguard to my PC. So, while I type on my AAC device, I can “surf the net.” It’s amazing! When I’m using my Vanguard with my PC I feel very powerful! Technology is a way for me to participate. Thank you God!
In conclusion, I wish to refer to the classic phrase, “It’s not about the destination, it’s about the journey.” I have always believed a person should live and enjoy each moment to the fullest, regardless of the circumstances. There have been times that I’ve wondered what is happening to my life. Now, time has passed and God has talked to me more indepth. I believe in God and I believe in me! It’s a BIG responsibility to represent the Lord but I love God very much and I’m up for the challenge! God and I will complete this recovery from brain surgery … together.
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