So I've had a lot of time to think the past couple of weeks. After facing the painful loss of someone I loved recently, I've been reflecting a lot about time and about life. The question of the week this week really hit me hard. I realize how precious time is... so I've been thinking a lot about those people who have loved ones who are battle HIV and AIDS on a daily basis. I've been trying to consider what the "battle" is.
With viable treatment options, is the battle all the medications they must remember to take?
Is it affording the ARV drugs?
Is it the doctor's visits?
Is it worrying about what others will think?
Is it the worry that any condition brings that you may miss out seeing a milestone of your child?
I'm sure it's a combination of all those things and more. And this week, I feel a special emotional connection towards those people. I know a lot of my peers have brought up the concept of "quality of life". I think quality of life is defined on an individual basis. Some people think having to take medicines everyday is a diminished quality of life.
I think that a life without those I love is meaningless, but as long as I have them, I would have something to live for. As an extension to my question of the week I realize now that we have to continue improving treatment options. We may be racing to the cure for a long time before we get there... but the better our drugs get, and the more we know about the virus, the lesser the burden on those who are HIV positive. If those drugs allow someone to live a little longer and love a little more of those around them, I think that is a huge blessing. Being HIV positive no longer has to mean a couple of years left to live, it means a lifestyle change, and sacrifice, but thanks to those who have care enough to research the condition, people now have options to prolong their lives many years. It's still a burden, but one that many people are proving can be lived with. I do believe that the stigma, although still very existent, is starting to lift little by little by those who care. People like our professors and those in this class who refuse to be a part of the ignorance are making the difference and I am so proud to be witnessing it. There is still much work to be done. I just can't stress how important love is right now. I know it probably sounds so corny, but love today, love now. It's the best time. Leave nothing unsaid that could lift someone's spirits. Those sentiments and time are priceless.
As for a Did You Know?
http://www.npaihb.org/images/epicenter_docs/aids/2008/Adult%20HIV%20Fact%20Sheet.pdf
This is a PDF regarding American Indians and Alaskan Natives. They are not perhaps the demographic that we first think of when we think of HIV. After being in this class, I realize the dangers of stereotypes. This is a call from American Indians and Alaskan natives to their brothers and sisters within their cultures to "Stop the Silence". They even mention how stigma is costing lives. I think a lot can be learned from this. It's a reminder of how global HIV is... it's a threat to everyone. It all goes back to that common theme.
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Christine, I am deeply sorry that you have recently lost a loved one. Im sure this has put many things in perspective for you. Im really sorry. It does depend on the individual when it comes to defining the quality of life. For me, I would probably rather die at the time instead of taking the kidney. I personally, am not afraid of death as I believe I would be going to a better place, but thats just my opinion. Again, I am sorry for your loss.
ReplyDeleteThe "quality of life" question is a very hard one. I have a grandmother who had a stroke back in February. She is only 64, and is now bed bound in a nursing home, where they take awful care of her. She was a working normal walking talking adult. Then one day she had a stroke, and now she sits in a bed, where she can't do anything herself. She can speak, but no one understands her, and she can move one arm, but can't write. She has one good eye, and the other is covered with a patch. There are days where she doesn't get out of that bed. She sits in that tiny room for days on end. Yes, we are so happy she survived, but there are times when I wonder if we made the right choice to give her a trach. We had the chance to "pull the plug" so to speak, or give her a chance to recover (with the trach). Well now we are to the point where this is the most we will get out of her. She is still fed by tube, and depends entirely on the nursing home staff for everything. Yes she is alive, but only really existing, not living. She even communicates to us that she would rather of passed away than be kept alive like this. It's absolutely heart breaking. Just yesterday she sat in a wet diaper for over an hour while I visited her. This is at Deltona Health Care, and I'm in the process of trying to do what I can for her. When I said something to the director of admissions she told me I needed to realize my grandmother isn't the only one in this home, and that there are plenty of other patients that need care. Yea, I understand that, but it doesn't mean you don't do your job! The quality of life for the elderly is something I hope to change when I enter the medical field.
ReplyDeleteI'm sorry for your loss Christine. Losing someone is one of the hardest things to endure and the grieving process is arduous and long. You're right love while you can. When I'm talking to my significant other, saying or texting I love you takes little time and I always think if it were the last time I talked to her it would be worth it! Time does heal though. As far as the kidney is concerned I agree with medicine is providing a better quality of life. However, I think that an HIV organ into an already compromised body isn't a sure bet either. I don't know its a tough situation either way.
ReplyDeleteI too have recently lost loved ones, 2 family members and 1 college friend in the past year. These experiences really make you appreciate the time we are given to spend with those that we love. Just makes me think, live each day like it may be your last, who knows, it just may be. Life is a precious gift, one that must be cherished. I'm sorry to hear about your loss Christine, just remember that its not goodbye, just "see you later".
ReplyDeleteI agree with you that you should always tell the ones you love that you do indeed love them. It is so simple to say, but will cause the most grief if something were to happen to them and your forgot to tell them that day. We all need reassurances that we are truly loved. I will not let my daughter leave for school without telling her how much I love her, even when she has just made me angry. I try to tell her she can disappoint me but I will always love her.
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