We all have relationships. From the first second we arrive. First is Mom. Even babies given up at birth for adoption have that first relationship with the woman who gives them life. From there we march on – Dad, Grandparents, siblings, cousins, Aunts, Uncles, other family, then to kids at daycare, or kids at school a little later. School brings new relationships – teachers, bus drivers, crossing guards. Then comes middle school (formerly known as junior high) and you have more teachers, coaches, friends, and for many, that first girlfriend or boyfriend – with out the space in between the words. That first crush – another relationship. That first break up – an end of a relationship. If you are very very lucky, you have not experienced the end of a relationship due to death by this point. Very few are. With people waiting until they are older to start families, it is inevitable that grandparents will pass away before their grandchildren become adults – some before they are even born, for a multitude of reasons.

But back to relationships. We enter high school, and our relationships mature as we do. We are likely to find “love” here – although hindsight will tell us it was hormones, at the time its every single lyric to every single love song ever written describes exactly what we feel. So we leave high school, and either go to college, go directly to a job, go in the military – there are a multitude of paths we can meander on this journey. Some paths we find end in a steep cliff – and we turn around and try again. Some paths split – and we are left to determine which direction we should take. On every path, we find relationships. We may choose to travel these paths in solitude, or we may decide that our path is wide enough to be travelled with a companion – a partner to help navigate the difficult twists and turns encountered. There are those relationships that are strictly in the workplace. There are relationships that overlap. There are those that are strictly personal. But if you really want to look at life as a whole, it’s just a web of relationships. People who come into your life, impact it, and leave it. Even the cashier at that gas station out in the middle of nowhere who smiled at you, the weary traveler who was just ready to be at their destination, has a brief relationship with you.

There are relationships that have no physical contact. Just a generation ago, these relationships were brought about through telephone contact – the customer service representative you had to speak to – or the lost art of the pen pal. For those too young to remember, we used to write cards and letters, on actual paper, put them in an envelope, and put a stamp on them and mail them. If it was a pen pal, in many cases it was someone you had never met, but that you began a correspondence with and became friends, by way of your cards and letters. Much like Facebook – except much more time-consuming. Today we have social networking, email, teleconferencing, Skype – we can have relationships with people globally in an instant!

There are the relationships no one really wants to have. The instant relationship you have with the police officer who pulls you over. This relationship will be over in a matter of minutes – but the attitude you have toward it will determine its positive or negative impact and outcome in an instant.  The relationship you have with the principal at school, when you have done something you should not have. The relationship with your health care providers. I make this plural, because unless you lived a century ago, it would indeed be a rarity for you to only have one doctor in your life. These relationships do not have to be negative – but lets face it, we all want to be healthy enough that our doctor does not know us well. We want them to be very familiar with our health issues – but we really don’t want that relationship to become close in any way.  Then you develop a life threatening/life changing or terminal illness. Wow! Suddenly, your doctors are the most important people in your life. They determine your treatments, your medications, everything. Your every breath suddenly hinges on every word they utter. Instead of your doctors being on the fringes of your daily life, they become the hub. Everything you do is impacted by what medications you are on, what treatments you are having, what surgeries you need, what side effects you are encountering. At this point, every relationship you have changes, by necessity. Especially for the terminal patient.

We have all hear it said live today like it was a gift, that’s why it’s called the present. Well, when you develop cancer, leukemia, lupus, diabetes, arthritis, heart disease, or any other life altering illness, every minute, every hour, every day is precious. Yesterday, before you knew you were sick, you went about your business, no real thought to tomorrow, living, loving, but not really aware of a time frame. Suddenly, you are sick, and you hear every click of every clock in the world. Time suddenly has a meaning. The phrase “I don’t have time” used to mean you would have time eventually, now you aren’t so sure. The biggest alteration, however, is in your relationships. Your spouse, your children, all your family members, all your close friends – they suddenly mean so much more to you. Even if your illness is not “terminal”, you have a heightened sense of urgency, a need to get things done while you can. Yes, there is a possibility that with treatment, your illness will simply be a part of life. There is also a possibility that suddenly your illness, depending on what it is, will dictate how you can live the rest of your life. This is the hard part, because now, possibly for the first time in your 20, 30, 40, 50, 60 or more years, you must have a relationship with a thing. A real relationship with your illness or disease. No, I have not lost my mind. Think about it. In order to combat your illness – or even successfully incorporate it into your every day life, you must have a relationship with your illness!

It really doesn’t matter what your illness is, or if it is life changing or terminal, as both change your life. You now must incorporate medications, treatments, possibly surgeries. Some illnesses require special equipment – compression garments, braces, canes, walkers, wheelchairs, oxygen tanks, catheters, ports, special shoes, shower chairs, grab bars. I must insert here that out of all the equipment we have ever had – with my son for the past 29 + years, or my husband for the past 5 years – NOTHING is quite as hilarious as the “Butt Buddy”. It is a handle, with a “gripper” at one end, that you can put toilet paper in so you can attend to yourself without assistance. If anyone who reads this blog has figured out how to utilize this particular piece of equipment, please let me know – because it has been the source of much amusement, but little use. Anyway, back to equipment. It doesn’t matter what it is – from a little wrist brace to wheelchair to electric hospital bed – you now have relationships with multiple inanimate objects in order to coexist with your illness. For some illnesses, you may get the joy of learning to give yourself injections. For virtually all illnesses, at the very least you will learn the joy of pills. No matter what your illness is – get a small memo pad or something to keep track of your medications! There is nothing like the sense of panic when you get up on Sunday morning and the pill bottle is empty – and the pharmacy is closed. Or calling in a refill on Friday afternoon, only to discover that the doctor must be contacted before you get another refill, and the office is already closed – until Monday.  Know what you are taking. Ask questions. Expand your relationship with both your doctor and your pharmacist – have an open line of communication, especially when there is a new drug involved. Side effects can be brutal – or minimal. Like all illnesses, they vary by person, because each of us is different – but have that communication open. It makes living with an illness so much easier.

The bad part about having a life changing/life threatening or terminal illness is also relationships – the loss of them. It will happen, that’s a fact. I’ve written blogs about this subject, so I won’t go into it here. But people will leave your life for whatever reason. It’s not something that is easy to deal with, especially when its someone you thought you could depend on. But just as you must have a relationship with your illness, so must anyone who you have a relationship with. Your illness does not have to define you – but it is a part of you. That’s just the way it is. I hear you already – “I’m not going to let {insert illness here} rule my life!” GOOD! But, for instance, if you are diagnosed diabetic, and you and the guys used to meet at the ice cream shop every Friday after work – well, you may just have to make an adjustment there. Another for instance – my husband takes two medications that say to limit direct exposure to sunlight – kinda makes sitting outside at noon a little difficult. Just like any relationship – adjustments are necessary.

Now comes the hard part – and the point I think is the most crucial. Don’t be ashamed of your illness. You do not have to like it – I don’t know anyone who likes to be sick. You can hate it. You can loathe it. Just don’t be ashamed of it. Incorporate it into your life as you have to. It will be there whether you choose to acknowledge it or not. Because get this – people you interact with, in most cases, will not know you are sick unless you tell them! But I don’t want their sympathy you say – I say I’d rather have their sympathy than their misplaced scorn because you have been calling in to work – they think you are lazy, because they don’t know about the intense chemo treatment that wiped you out. It takes immense intestinal fortitude – commonly known as guts – to just put it out there. Social media makes this easier. I know, I know, its your private life you want to keep it private. But let me ask you this – how can people be aware of what is going on if you hide it!? Yes I understand privacy – but I also understand ignorance. Awareness and education are the two biggest weapons we have against ignorance, and we owe it to ourselves, as well as future generations, to use every weapon at our disposal to combat ignorance. The textbooks don’t tell it like it is. Blogs written by people who are living it every day tell it like it is. Blogs written by caregivers tell it like it is. We have to change the stigma. We must shine a super spotlight on cancer, on diabetes, on lupus, on RA, on MS, on ALS, on leukemia, on fibromyalgia, ON EVERY SINGLE LIFE THREATENING, LIFE ALTERING OR TERMINAL ILLNESS!!!!! We closed the sanitariums years ago – so we would stop hiding illness and “different” people. I’m sure you have seen the letter this week from Canada, when some ignorant person suggested euthanization of a handicapped young man in a brutal, heartless letter, that they were then too gutless to sign.  This type of thing is EXACTLY what awareness can help to eliminate!!!!!!! We can’t eliminate idiots, we can’t eliminate hatred, we can’t eliminate ignorance – but we can show it for what it is. We can show the true face of our diseases, of our illnesses, and all the side effects, all the ancillary things that go with them, and expose the idiots as idiots, expose the haters for their hatred, expose the ignorant for their ignorance, expose the heartless for their lack of compassion. Most importantly, we can DISPEL THE MYTHS!!!!!!

So you ask, what can I do? Well, you have read this blog. Read others, by those in the trenches with cancer, with lupus, with diabetes – not the glossy brochures that try to make horror into a fairy tale – but the real stories, the true life stories. And share everything you read – share on Facebook, share on twitter, tell people you know. Shine YOUR light of awareness into the dark recesses of ignorance in your world – and soon we will have more light than darkness, and ignorance will flourish no more.

Relationships – the very fabric of our lives. The weave and color of that fabric is determined by YOU. Thank you for your time in reading this – please take a couple more seconds and share.


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